Archive for May, 2007
What the…?????
May 28, 2007 | Updates
OK, when I don’t update for so long, there is so much to tell. But I will try to make it fast.
First off, Samuel’s seizures are still a concern. However, they do seem to be better. We will probably raise his Neurontin over the next week if I can get it OK’d with the neurologist by then.
Second, Samuel’s new diet is going well. He threw up one of the first days of therapy, and hasn’t done so since. In fact, he hardly ever even spits up, so we are glad for that. It is nice to be able to feed him before school or before church and not have to worry about him throwing up on me :).
Next, amazingly enough, I figured out why Samuel had that horrible myoclonus a while back on our trip to Salt Lake. His bladder was full and he couldn’t go to the bathroom. I have known for a long time that Samuel does not urinate when he is sleeping. So I have to watch him closely when he is sick or sleeping longer than usual and I have to cath him at those times. A few days after that episode, it happened again – the exact same situation. Samuel woke up “jumping”. He was obviously upset and he was having myoclonus every few seconds. I didn’t know what was wrong, but suddenly realized his diaper wasn’t wet and he hadn’t been changed since I put him to bed. So I cathed him and as soon as I was done, he was better.
Now, you’d think I would know to keep catheters with me since that happened. But, sometimes I’m not that bright. Unfortunately, the next time it happened, we were in Orem – without a catheter. I tried getting him to relax. I tried a warm bath. I tried getting Praxair to bring me a catheter, but they didn’t have small enough ones. I tried the Instacare and they wouldn’t do it. So, we ended up in the ER. It was a nice visit this time, though. Samuel was asleep at that point, and I really don’t think the doctors or nurses thought I knew what I was doing. But I assured them his bladder was full and told them to please just cath him and we’d be on our way. They did and sure enough, he was REALLY full! And as soon as they were done, I left with my regular happy camper! Crazy, huh? If only he could say, “Mom, I have to pee!” But now I know that the myoclonus or “jumpiness” means he’s in pain somewhere. That’s probably a good thing to know. And I’ve determined that the cause was me switching him from getting formula all night to getting water all night. The water must go through him faster. So, I’m just giving him less at night now and it seems to have fixed the problem.
Hyperbarics went great! Like I said, we pulled him out early one day because he turned himself entirely around and then got stuck face down in a little spot at the end of the chamber. He was pretty gosh darn mad about that. But, otherwise, no crying in the chamber during all 10 ½ sessions! WOW! He just laid there and watched a movie – mostly Cars or Shrek. If we saw he was getting bored, we’d just pop in another movie and he’d settle back down. He also slept through some treatments since we scheduled them to be during his naptime and right after suit therapy.
Suit therapy went pretty well. We only managed 2 weeks of it, however. It was just too difficult for us to be gone any longer. We did about 2.5 hours each day and Samuel really worked hard. He would get there early in the morning, work his little butt off and literally fall asleep before we were even out the door. The therapists were great. We had Mikell who led all the therapy and worked Samuel very hard. And then there was Tenley who entertained Samuel through all the tough spots. There was also a therapist in training, Christine, who helped out a lot. Between the 3 of them and me, Samuel was out numbered! I think his favorite thing there was when Tenley would sing Signing Time and make up her own words and signs. He thought she was crazy and hilarious.
The therapy was good for Samuel. The suit really works against you, so it makes it harder to do any exercises. It really wore him out each day. We did a lot of working on head control and I did see a difference there. We also gained a lot of information to use in therapy for him at home. It would have been nice to stay another week, but we just couldn’t swing it. Hopefully, we can go back at a later time. I’m hoping that we can do it again when Samuel’s pump dosage is lower and he, hopefully, has more control over his body. We may even buy our own suit at some point. We’ll just have to see.
One quick story about therapy. Samuel did not like crawling with the suit on. Bummer, since that is really what I was hoping the suit would help him with. But for the first few days, he would just cry and cry through any crawling that we did. Yet, at the end, we would still reward him by jumping on the therapy ball or running down the hall with him. After watching the crying get worse and worse each day for about a week, I finally decided I’d had enough. So I sat Samuel down and had a talk with him. I told him that we were going to crawl no matter what. But, if he cried while he was crawling, I wouldn’t reward him. Then we tried it again. He started to cry a little and I said, “No crying! Or we’re not running!” And he would stop. I had to really coax him through the first 2 times, but he didn’t cry, so we ran! And guess what?! He didn’t cry anymore during crawling that entire next week! Sometimes I really wonder what he can understand and just when I don’t know for sure, he does things like that that tell me he absolutely does! Way to go Samuel!
And a little story about this week’s picture. I left Samuel in his bed to watch a movie and came back to find that he had pulled out his feeding tube and tied a knot in the end of it. Pretty crazy for a kid who has hardly any control over his hands. So I put the tube back in, left the room for 5 minutes, came back and Samuel had taken the pillow case off his pillow. All I can say is, “What the…?????” Oh, yea, and those are his little stocking feet up by his head!
Last of all, during our few weeks away, we reduced Samuel’s pump another 60 micrograms. He is getting very close to an overall dose of 300. The hyperbarics seems to have helped his tone as it always does, so we are ready to start going down again. And I even saw Samuel sucking on his bottom lip those last few days of hyperbarics, which is a new thing. We may have to try and do more than 10 sessions in a row next time and see how much more improvement we get.So, that’s the last 3 weeks in a nutshell. It’s been crazy and I’ve put WAY too many miles on the car. But it’s all worth it. Keep praying for our little guy! Only he’s getting bigger fast. He’s 39 inches long now. If only I could get him past 30 lbs!Love,
The Jewkes
Climbing back up the hill…
May 6, 2007 | Updates
This week has been better. Thank goodness! Samuel still had a rough week, but not as bad as last week. He went to school for a few hours on both Wednesday and Thursday. On Friday, he had cranial sacral therapy and did really well and then we went to occupational therapy and he did very well considering how upset he has been lately. I do not necessarily think that the new seizure medication is working. Samuel still has many seizures each day. But I have been medicating him more to ensure he sleeps enough and that has helped tremendously. We will be able to raise the dose of the new seizure med in another week and can even go up from there. So just because it isn’t working now doesn’t mean it won’t. We just have to go up on the dose slowly.
I also pulled way back on the change over in Samuel’s diet. I have slowly weaned him back onto the new diet over the past 2 weeks. We finally got him up to the full new diet yesterday. I’m hoping this diet will help his body become healthier and help him gain a little weight. It may also help with his seizures since it is a low carbohydrate, high fat diet. But only time will tell that. He weighed in yesterday at a whopping 29 lbs. I’m really hoping that we can get a few more pounds on him because he looks so skinny!
I’ve spent the entire week trying to set up some new therapy for Samuel. We will start hyperbaric treatments again on Monday. We will go for 2 weeks, maybe 3. And we will hopefully start an intensive therapy program on Wednesday and go to it for at least 3 weeks. It is down in Orem and hyperbarics is in Murray, so we will be on the road a lot. We will probably stay as much as possible with my grandma in Orem so we don’t have to drive home each day. The only down side is Samuel will have to miss a lot of school, which I hate to do because he loves it so much. But I really think this will be good for him and I’m not sure we could swing it all once the kids are all out of school. So we’ll just have to do it now. The good news is that Samuel has school during part of the summer, so that will make it a little better.
The therapy we are trying involves suit therapy, which is putting a funny little suit on Samuel to give his body a lot of input as he does therapy. As I spoke with his occupational therapist this week and his physical therapist last week, we all agreed that Samuel is moving purposefully and he is a very determined little guy. But he doesn’t appear to have any idea where his body is in space. This suit will give him that input and, we hope, help him learn to crawl. That is my goal for him these next 3 weeks - to army crawl. He is determined enough! So let’s pray he does it!
We got to go to soccer games this week and I got some cute pictures of Samuel. And this Monday, we will attend the ground breaking for a new park in River Heights dedicated to a little boy who drowned recently at Lake Powell. Tom happened to get an email about the park and forwarded it to me. As I watched the video on their website, I realized that I knew the little boy’s dad. We went to college together at USU. I emailed him and told him who I was and about Samuel. This little boy’s dad donated a fence picket to Samuel that will be engraved with his new website address and will be one of hundreds of fence pickets around the park. We also donated a little money and were able to purchase a pathway paver stone that will have Samuel’s website address on it along with the words “Near Drown ‘05″ and we bought another paver with the names of all our kids on it. It’s going to be a great park and I hope one day I will be able to take Samuel there and watch him run and play and jump up and down on the little paver marking his journey. Wouldn’t that be wonderful :)!
So, this week will be hectic, but hopefully lots of good will come from it. Keep praying that we will be able to control Samuel’s seizures and pray hard these next few weeks that he will be able to endure all the therapy and hyperbarics and that he will learn to CRAWL!
Thanks so much!
Love,
The Jewkes
Why did God send Nathan?
May 5, 2007 | Updates
If you’ve been reading our posts for sometime now, then you will know that 3 months after Samuel’s near drowning accident, I became pregnant with Nathan. I was literally devastated when I found out that I was pregnant. I had considered having one more child, but I had decided that Samuel’s accident was an answer from God that my plate was full and I was not to have anymore. I was upset, and totally bewildered as to why God had asked me to take on something I KNEW I couldn’t handle at that time. How could He think I could deal with being pregnant and having a baby in the midst of all that was going on in our lives? And why had He caused something to happen that would take time away from Samuel who so desperately needed me to be helping him overcome his severe disability? I COULD NOT understand it.
I have come to believe now that there are many reasons – most of which I probably don’t even know at this time. The first one I thought of was maybe God sent Nathan so we could save his cord blood, which is full of stem cells, that may be able to help Samuel someday. So we banked his cord blood in a facility in Arizona and, hopefully, one day it will come in handy.
But there is another reason I have realized lately. God had to heal a portion of my heart. You see, a portion of my heart died the day of Samuel’s accident. Or maybe it’s more like it withered away over those first few months. It was the part of my heart that trusted enough to love. I loved Samuel, just like all my kids, more than I could ever explain. I loved his voice, his little walk, his laugh, his smile, his personality, his innocence, his sparkling eyes, his curly red hair and his love for me. He lit up my life each and every day and I allowed myself to fall DEEPLY in love with him.
And then one day, he was taken away. I know it’s hard to understand that, because he is still here. And I still love him so VERY much – even MORE than I did before. But it is different. As time passed, I couldn’t love his little voice or his little walk or his little laugh anymore because I honestly couldn’t remember them. And when I did remember them, it was too painful to want to do again. I still had his smile and his innocence and his sparkling eyes and his curly red hair and a small portion of his personality. But so much was gone, or at least hidden for a little while, and I missed that portion so very, very much!
So, when Nathan was born, I was afraid to love him. I knew I was. I knew I shouldn’t be. But I couldn’t help it. I didn’t know how to feel as I held him that first day or as he spent those first few weeks in the hospital. I was afraid to bring him home because I didn’t know how I would do it all. Once he was home, I held him and cared for him just like I had any other baby. But inside I knew that I was holding him just outside my heart because I was too afraid that if I did love him, something would happen to him and I just couldn’t bear that again.
In a few weeks, Nathan will turn one. And despite my attempts to hold him outside of my heart, somehow, he has made his way in. I love his deep blue eyes. I love that his hair is starting to curl up at the ends – just like Samuel’s. I love his smile and his 6 little teeth. I am proud of him each time he reaches a new milestone and amazed at the intricacies of his little brain. I love his fat little thighs and his chubby little toes. I love when he rests his head on my shoulder or lets me cuddle him. And I can hardly wait for him to begin to talk.
As I picked him up today, I wondered in my mind how I would have ever healed that portion of my heart if Nathan hadn’t come. It is a wonderful feeling. And although I worry just as much as I did before, that something might happen to him, I have come to discover that the joy of loving him is worth any worry; and I thank God above for knowing what I needed so much more than I did. So thank you God and thank you Mr. Blue Eyes and thank you Samuel for picking a new little brother on your journey to heaven to help your Mommy make it through this bump in the road.
Love,
The Jewkes
